Operation to Move Null Point - Kestenbaum Anderson

[spaceface76]

Hi

My son Leo is 15mths old. He has CIN and has a head tilt to the right, looking out of the left corner of his eyes. I have recently been told that he will need surgery when he is about six yrs old to move his null point to the centre. I believe either the Kestenbaum or Kestenbaum Anderson Procedure.

Is there anybody out there who has had this procedure (or is the parent of a child who has). I would be very appreciative to hear your comments about it.
I understand that Leo will have more difficulty when he starts to read and focus more. Also if he needs glasses he won't be able to see through the frame
I have seen the Orthoptist today who has explained the procedure medically but I would like to know how it has improved the lives of those who've had it. Is it worth it? How long does it take to recover? etc etc

I'm not normally a squeemish person, but the thought of my little boy being operated on is frankly terrifying! And although it may sound strange, I quite like his little head tilt. He looks very cheeky and it seems a part of who he is (it doesn't seem to affect him at the moment though)

Any advice or comments greatly appreciated
Sam
(mum of Leo 15 mths and Freya nearly 3)

[Sofie]

As far as I know (I have never had this operation) the idea of this is so that your son moves his head less or something.

Very occasionally, surgery is performed to alter the position of the muscles, which move the eye. The purpose of this is to reduce the amount the head has to turn to try and see better. However surgery cannot correct or cure nystagmus. (from rnib.org)

[dqbiggerfam]

Correct. While surgery does not cure nystagmus, it does help treat it. I am a member of the ANN mailing list, and have heard nothing but praises about the results of the surgery. While it may not effect acuity on an eye chart to a great degree, the world seems clearer, for lack of better words.

[ingmol]

I'm now 26 and had the surgery done this spring. I have nothing but praise for it and I wish I had had it done when I was a baby.

The headtilt may look cute, my mother has always liked my headtilt. The problem is, after 20 or so years of tilting your head in a certain way, you will start to develop problems. I've had years and years of neck and shoulder pain due to my head tilt, and my tilt isnt even that extreme. It has caused permanent damage to my neck, doctors say that I have the neck of a 40 year old already and that I can expect more problems as I age. The surgery has reduced my headtilt enough to remove the neck pain and hopefully stop any further damage.

The surgery itself was completely unproblematic. I had 2 weeks off work and after that was fine apart from the redness. The redness went completely after a further 4 weeks or so. The surgery was not painful and after about 2 days, I felt much better. the only discomfort was the stitches that were left in the eye to aid the healing process. It felt a bit like having a piece of sand in my eye and it was particularly noticable every time I blinked. The day after my surgery the muscles around the eyes felt very tight and I had to move my whole head when I wanted to see to the sides. It wasn't painful though.

The main problem after the surgery was that I had to retrain my brain in order to see properly again. This took about 3 weeks until I felt almost back to normal again. It was difficult to walk up and down stairs, I was more clumsy than usual, leaving the house was a bit of a pain as I felt dizzy particularly when in a car or train etc.

I highly recommend having the surgery done as early on as possible to prevent any damage being done to the neck, shoulders and back due to the head tilt.

I found a video of a similar surgery on YouTube, you can find it if you search for squint surgery. The video will show you what is actually done during the surgery. Looks a bit gory, but it is very informative.

Hope this helps, and good luck!

ingvild

[Sofie]

I've had nothing but problems with neck pain in the last week or so. How do I go about asking to have this operation done please?

[burns1979]

Hello,
Our Max had the operation to move his null point 12 years ago when he was 6. We lived in Colorado at the time and took him up to the Children's Hospital in Salt Lake City, Utah. I think it was the best thing we could have done for him. He, too, looked adorable tilting his little head when he was zooming in on something but we knew that was not going to be acceptable when he went to school and the kids started poking fun at him. My husband's brother (who's 50 now) grew up with nystagmus and was always nicknamed "hawkeye". He had day surgery and we stayed at the Ronald McDonald House for a few days to make sure everything went fine. Probably one of the happiest days of my life was several weeks after the surgery when he climbed up on our dishwasher to reach for something. He never climbed on things, rode bikes, went down slides, anything that he was unsure of before the surgery. But after the surgery, with his null point centered, he seemed more sure about his surroundings and even had a big celebration at school when he climbed to the top of the slide and went down. I would highly recommend this surgery and hopefully someday they'll find a cure to stop this condition all-together.

[John Sanders]

Hi all,

In the UK, the National Institute for Clinical Excellence (NICE) has published new guidelines (May 27, 2009) for null point surgery (tenotomy). NICE says "... current evidence on its efficacy is inadequate in quantity. Therefore, this procedure should only be used with special arrangements for clinical governance, consent, and audit or research."

You can find the guidelines at http://guidance.nice.org.uk/IPG299

The Nystagmus Network will talk to ophthalmologists for their views and publish an article on tenotomy in a forthcoming newsletter.

John

[Yvonne Sainsbury]

My Grandson was diagnosed with Nystagmus when he was 2 years old. He is now just 5 and is aware of his condition and told me that having to look to the side is upsetting him. His eyes do wobble but only when he is tired. We have been told that he has a null point and I am wondering if there is anyone out there whose child has had surgery for this. The vision in one of his eyes is not very good but the other is fine. I would appreciate a reply.

Yvonne.

[carolcato]

I don't know if it is the same for everyone, but Adam's head tilt changed dramatically between the ages of about 2 and 6. He went from turning his head through approx 70 degrees to keeping it straight, but lifting his chin (almost looking down his nose). I don't know if that was going to happen anyway, or as the result of having intensive cranial osteopathy (there are lots of other posts about that, so I won't bang on about it here), but it was a pretty dramatic change.

If you have to wait for the operation until he is older, my gut feeling is to leave the option on the table, but not worry too much about having it done until nearer the time (easier said than done, I know)

Probably of no help to you, but...

[spaceface76]

Hi everyone

Wow! Thank you for all your replies

Leo is now 3 and a half. His head tilt has changed slightly. He now seems to be able to control his Nystagmus a little better for close up work, so he can look straight ahead and only uses the head tilt for distance. Leo now also has a quite severe prescription for astigmatism and has glasses. Due to Leo's head tilt, he can only wear his glasses for close up work.

Despite Leo's vision, he is a master at drawing! He spends all of his time drawing really intricate designs. Very impressive I think, considering. He has also always loved climbing. He will climb anything and everything and his greatest joy is to jump off very high things His Nystagmus hasn't seemed to affect that side of him at all. He did take a little longer to get walking than my older daughter, but that could have been due to his size. He's a big boy and was a very chubby baby! He also took a lot longer to get confident in the water, I don't know if that was Nystagmus related. If he's not sure of something, he is very apprehensive. He now absolutely loves swimming. He won't go in without his goggles and is always under the water

A week ago, we went to the hospital again for Leo's usual check up and we actually got to have a proper talk with Professor Gottlob. She said that because of Leo's head tilt and the fact that he needs glasses, they will look at operating early next year

I'm VERY nervous about the operation, mostly from a soppy mum's perspective. I am very thankful for all your responses, especially that from Ingmol, you have answered many of my questions
I wondered about the stitches and whether he'd still have his head tilt until he learned otherwise. I'm so glad to know about your head tilt problems, you have made me so much happier about the surgery and I know now that I'll be doing the right thing.
I am very grateful that Leo can have this corrective surgery and also before he gets too old and before he starts school.
I am busy writing a list of questions to take into hospital on my next visit.

I wonder how long the stitches stay in and are they the dissolving type?
I also wonder if your vision improves at all after the surgery - I suppose not.
I was told that there may be a lot of redness and that Leo may need more than one operation and that he may have a squint afterwards?!
One of my biggest fears is that both eyes don't work together after the operation.

Ingmol, did you have your operation in the UK? Leo will have his operation at the Leicester Royal Infirmary, where professor Gottlob is based. I wonder if she does the surgery herself? I'll see if I can find that video on YouTube.

Thanks again for all your responses
Sam
(mum of Leo 3 and half, Freya 5 and now also Harry 3 months)

[matt314159]

I had the Kestenbaum procedure done around 1997 or thereabouts...let's just say about 13 years ago...I'd have been around 14 or 15 years old at the time. I don't really consider the surgery much of a success...on paper, sure, everything went fine, and I no longer tilt my head. However, my saving grace (my null point) all but disappeared. Now the only null point i have is looking down through the bottom of my eye with my head tilted back, and it's basically worthless. Looking back I wish I'd have waited and maybe tried a tenonomy or whatever it's called, where they detach/reattach the rectus muscles instead of shortening them.

the idea with the Kestenbaum procedure, as I understand it, is to simulate the muscle tension of your null point, but at a forward gaze, if that makes sense. So they snip and shorten certain muscles to give that same feeling that your eye has with the head turned, only when you are looking forward. But, like I said, I didn't find it very helpful in the long run.

[spaceface76]

Hi Matt

Thank you for your reply.

So if I have this right, you had the surgery to move your null point to the central position but all that happened was the ability to get your null point practically disappeared?! So the position that's best to hold your eyes steady now is looking straight down? I haven't heard of this other procedure you talk about before. Do you know anything more about it so that I could mention it to the professor?

I find myself in a bit of a dead end situation, with really only one way out.
When Leo starts school in September he won't be able to see well enough to read and write. At the moment he copes very well but lately I'm starting to notice his visual difficulties more. Obviously I don't think I can do much if this is the only real answer to help him to read and write (with the help of glasses) but I really need to do my research for him before they operate.

Thank you so much for telling me about your experience. I haven't been able to get any advice from the hospital, other than it may take more than one op.

Kind regards
Sam

[matt314159]

Hi Sam,

I think the official name is a "Horizontal Tenotomy"
Here's a quick link I just googled, but surely there are more--and better--articles available.

http://www.orlive.com/akronchildrens/vi ... nystagmus1

I can only speak to my experience with the kestenbaum procedure, but I wasn't that thrilled with the results. From my parents' perspective I'm glad they did it, I mean it was worth a shot, but knowing what I know now, I probably wouldn't do it again. It seems, from what I've read, that the tenotomy is kind of the newer thing and that the kestenbaum procedure is a little on the archaic side.

As to my null point, to describe where it is now...imagine you're wearing glasses, and you need to look underneath the frame...you tilt your head back and look through the bottom, and a little inward towards your nose. That's where mine is now. So in all practicality, it's not very useful.

Additionally, one thing I'm looking into, and it might be worthwhile letting your Ophthalmologist look into this as well, is pharmacological treatment via gabapentin and/or memantine. Its basically high doses of an ant-convulsant (epillepsy) drug that has been shown to work pretty well.

The university of Liecester in the UK did a study in 2006ish that showed promising results, and published a medical journal article in 2007. I spent quite a bit of time trying to track this document down, and finally got it through my university's inter-library loan system. I have uploaded it to google docs and it's available at the following URL:

https://docs.google.com/fileview?id=0Bz ... NGYz&hl=en

I'd suggest maybe printing that out and presenting it to your Ophthalmologist as well. It's had promising results: viewtopic.php?f=6&t=64&start=0&st=0&sk=t&sd=a

If you have any more questions feel free to post back or email me via the link below this post.

[rickles58]

I'm new to this board so let me give you a quick history. I have Congenital Nystagmus. History is a very pronounced male-female-male lineage. I have worn glasses for near-sightedness since I was 3-1/2 years old. I now wear bifocals. I am a 52 year old male.

I had the Kestenbaum procedure approximately 10 years ago to correct a 35 degree head-turn. The surgery was largely successful, in that I now have approximately a 5 degree turn in the opposite direction (essentially a 5 degree over-correction).

The complication for me was that this revealed strabismus for which I had previously compensated as part of my head turn. My surgeon and optometrist were able to confirm this by looking at photos of me over the years. I'd suggest that you talk to your surgeon about the same possibility and see if you can take care of that at the same time.

I subsequently had strabismus surgery which did not completely correct the condition. I have opposing prisms in my glasses to compensate for the remaining strabismus.

Up until the Kestenbaum, I had worn contact lenses for about 15 years and loved them. Since then, I have had to wear glasses since I need the prisms. That is my only regret. I suffered from the same neck problems discussed by a previous commenter.

I would highly recommend the Kestenbaum as early as possible. I wish my parents had been aware / willing when I was a child.

Hope this helps you decide in favor of the surgery for your son. Good Luck!

[spaceface76]

Hi Rickles

Thank you so much for your post. I am eager to hear of other people's experiences. We've not been given any facts or figures about success levels or told of any problems other than if I've asked a direct question.

Leo was due to have his surgery last Wednesday but we had a call last week to say that it had been cancelled?! We haven't been given a new date yet so it's a bit of a waiting game now.

Leo is regularly tested with prisms and so far we've been told he has binocular vision. His depth perception doesn't seem to be affected by the Nystagmus at all either. Were you tested with prisms before you're operation?

I read an article earlier this year saying that a head turn to the opposite side often happens after the Kestenbaum procedure (predictably I can't find the article anywhere now). It said that it is often uncomfortable to look straight on afterwards. Did you find this to be the case? I was assured that this probably wouldn't happen but then later I was told by the professor that it is a possibility, especially straight after the procedure but it should settle after a while.

Leo also has an astigmatism and I've been told that the surgery could affect the shape of Leo's eyes and therefore alter his astigmatism.

For a long time I toyed with the whole idea of surgery and whether or not we should proceed with it. But Prof Gottlob has told me that whatever the outcome Leo should be better off after the surgery than he is now. I finally decided it was the right thing to do and then the hospital cancelled!

Do you think you would feel the same if you were younger and had to wear the prisms in your glasses during your school years? Do you still have neck and spine problems or have they eased now that it's been 10 years without such a severe head turn? Also I have been told that Leo won't be able to turn his eyeballs to the left of his eyes at all after the surgery. The prof said if Leo could do that he would automatically go back to using his head turn. Have you lost this ability to move your eyeballs to the side and how has this affected you if so?

I'm sure we will go ahead with the surgery and thank you for being so information and so positive despite your set backs.
I'm sorry to bombard you with questions but I do think that the information is much better coming from the horses mouth (so to speak).

Thanks so much for your help
Sam and Leo